In honor of Sickle Cell Awareness Month, we spoke with Jasemine Jackson-Winston, a college student dedicated to helping others understand this rare disease that affects Black people at a disproportionate rate.
Jasemine Jackson-Winston’s day often starts in pain. She takes about five different pills for it, including her daily vitamins and anxiety medication. If she’s well enough, she’ll eat breakfast and go to school. On the day she spoke with me, she didn’t — not feeling so great, she texted her classmates for the lecture notes. This is the reality for Jasemine, a fierce 21-year-old biochemistry major at The Ohio State University in Columbus who has been living with sickle cell disease her whole life.
A genetic disorder occurring in every one out of 365 African-American/Black births, SCD affects the shape of red blood cells, which carry oxygen throughout the body. For people without SCD, these cells are doughnut-shaped, allowing them to move easily through the bloodstream. But for the more than 100,000 Americans with sickle cell, red blood cells can become sticky, hard, and shaped like crescent moons (or sickles, hence the name). This can cause them to get stuck in blood vessels, as they travel through the body causing pain and other complications. Right now, the only potential cure for sickle cell disease is a bone marrow or stem cell transplant; however, they’re typically only available to children and teenagers who have a severe form of the disease. And because these treatments are hella risky, they aren’t done all that often.
For Jasemine, whose type of SCD isn’t considered as severe as others (she has HbSC), this procedure really isn’t an option, and it means lots of pain medication and lots of hospital visits. “I’ve been cutting down my hospital visits to about once a week. So usually I try to go on the weekends, but if it’s bad enough … I’ll go during the week,” she says. “Always being in the hospital, especially as a college kid, as a senior, you want to go out, you want to hang with your friends, and you can’t do that if you’re sick or if you’re not feeling well. It’s definitely frustrating sometimes, but you just kind of have to get through it and have understanding friends and peers.”
While her friends and fam may be understanding, unfortunately, that’s not always the case when it comes to some physicians. Jasemine’s had to deal with medical bias in the form of rude, dismissive doctors at times. She’s even been accused of being a “drug seeker” — a term used to describe patients who frequently visit their doctors with complaints of pain in order to get prescriptions for strong medications. “In the sickle cell community, they tell us to try to distract ourselves when we’re having pain. So that means play on your phone and talk on the phone and watch TV,” Jasemine explains. “One time, I was in the ER [and] that’s exactly what I was doing; I was on the phone distracting myself, you know, watching TV. I sat up and I was trying to eat and drink because I hadn’t eaten [in] two days, [and] the provider came in and was like, ‘You’re on the phone, you’re sitting up, you’re fine. You’re not having pain, you’re a drug seeker. Get out of my ER.’”
According to Jasemine, this kind of disregard for sickle cell patients’ pain happens on the regular. “I definitely think it’s an issue where they don’t believe that our pain is real, and they believe that we’re faking it or it’s not that bad,” she says. It’s because of all these experiences that she’s decided to become a doctor, specifically a hematologist/oncologist, so she can help others living with sickle cell.
In the meantime, Jasemine’s raising awareness for SCD with her TikTok Lego Challenge, in which people can post videos of themselves walking barefoot on Legos using the hashtags #Legosicklecellchallenge and #sicklecellawarenessmonth. “[My mom] was just basically like, you need to think about an idea, a challenge [that] people can do for sickle cell,” she says. Jasemine figured the best challenge would be one that could help simulate, in a way, how a sickle cell crisis (pain episode) feels. “The only thing I could kind of come up with is [when] I’m at my cousin’s house and I step on a Lego, and I’m like, ‘Oh, that hurts!’ … And then, [my mom] just kind of ran with it.”
Jasemine would love to see her challenge blow up the way the “Ice Bucket Challenge” did in 2014, which brought in $115 million dollars for the ALS Association. Jasemine also wants to use the challenge to help people understand that sickle cell pain should be taken seriously and that people living with SCD don’t always look sick.
Another thing she wants people to know? Sickle cell disease doesn’t define her or anyone else living with it. “Although it’s not easy, and it can be really frustrating, sickle cell isn’t the most important thing about me. I have a lot of other qualities that determine who I am,” she says.
Here’s how you can help spread awareness of SCD this month and all year long: “Donate blood … We do not have a lot of people of color donating blood, [and] it can help up to three individuals,” Jasemine says. “If I’m having low hemoglobin, and I’m really sick, I need the blood [and] so do other sickle cell patients. So, I definitely think that donating blood, raising awareness by doing the Lego challenge, and you know, just telling your friends and family about it, trying to get the word out there that it’s a real problem, it’s a real disease [will help].”
Main photo: Courtesy of Jasemine Jackson-Winston
